Predictors of loss to follow-up among children on long-term antiretroviral therapy in Zambia (2003–2015)

BACKGROUND: Retention in care is critical for children living with HIV taking antiretroviral therapy (ART). Loss to follow-up (LTFU) is high in HIV treatment programs in resource limited settings. We estimated the cumulative incidence of LTFU and identified associated risk factors among children on ART at Livingstone Central Hospital (LCH), Zambia. METHODS: Using a retrospective cohort study design, we abstracted data from medical records of children who received ART between 2003 and 2015. Loss to follow-up was defined as no clinical and pharmacy contact for at least 90 days after the child missed their last scheduled clinical visit. Non-parametric competing risks models were used to estimate the cumulative incidence of death, LTFU and transfer. Cause-specific Cox regression was used to estimate the hazard ratios of the risk factors of LTFU. RESULTS: A total of 1039 children aged 0–15 years commenced ART at LCH between 2003 and 2015. Median duration of follow-up was 3.8 years (95% CI: 1.2–6.5), median age at ART initiation was 3.6 years (IQR: 1.3–8.6), 179 (17%) started treatment during their first year of life. At least 167 (16%) were LTFU and we traced 151 (90%). Of those we traced, 39 (26%) had died, 71 (47%) defaulted, 20 (13%) continued ART at other clinics and 21 (14%) continued treatment with gaps. The cumulative incidence of LTFU for the entire cohort was 2.7% (95% CI: 1.9–3.9) at 3 months, 4.1% (95% CI: 2.9–5.4) at 6 months and 14.1% (95% CI: 12.4–16.9) after 5 years on ART. Associated risk factors were: 1) non-disclosure of HIV status at baseline, aHR = 1.9 (1.2–2.9), 2) No phone ownership, aHR = 2.1 (1.6–2.9), 3) starting treatment between 2013 to 2015, aHR = 5.6 (2.2–14.1). CONCLUSION: Among the children LTFU mortality and default were substantially high. Children who started treatment in recent years (2013–2015) had the highest hazard of LTFU. Lack of access to a phone and non-disclosure of HIV-status to the index child was associated with higher hazards of LTFU. We recommend re-enforcement of client counselling and focused follow-up strategies using modern technology such as mobile phones as adjunct to current approaches.